'Before I was diagnosed with multiple sclerosis (MS), I was very keen on sport and was always very active participating in sports teams, such as when I joined Colchester Ladies Hockey Club and later on, a Colchester badminton team. I also started playing golf in my mid-thirties and was a very active gardener as I got older.
'However, pre-diagnosis, I had an unexplained ‘attack’ which left me very fatigued with a tendency to quickly hit a ‘fatigue wall’ during any physical exercise, even just walking to the shop. This meant that my very active lifestyle came to something of an abrupt end, even though my mind still thought of myself as fit and active. Suddenly, I just couldn’t do the things that I used to do. Despite my mind telling my legs to run, jump or whatever, my muscles just weren’t able to comply. The messages from my brain just weren’t getting through. It was a very scary time and I began to get scared of trying to carry on doing any physical activity.
'I remember one time when I was still just able to trot a bit and I was walking across a field to our campervan, and it began to rain. I started to ‘run’ towards the van for shelter and took a big tumble which twisted my ankle, wrenched my back and gave me big bruises and muddy clothes. Luckily, I’d fallen on grass but as I’d not fallen over since I was a toddler according to my Mum, it gave me a big shock! This episode really dented my confidence and my physical activity reduced considerably after that.
'Once I received my MS diagnosis, I was overwhelmed by so many fears, worries and confusion. I found it difficult to take in and understand all the advice and information I was given. I didn’t ask about physical exercise or about many other things related to MS because I didn’t know enough to know what to ask, my mind was in a spin. All I remember was being told that ‘overdoing it’ could bring on a relapse, and to rest and pace myself or I would ‘pay for it’. This made me very worried about doing any physical exercise in case it brought on a relapse.
'After my diagnosis, I now exercise twice a week at MS-UK’s wellness centre Josephs Court on a Therabike and on the Vibeplate. I joined Josephs Court two years ago and have been aiming to strengthen my arm and leg muscles to help compensate for my severe fatigue and to reduce the risk of falls. I’m really pleased with my progress and I’m now able to do a lot more than I was able to do before I hit my ‘fatigue wall’. I’ve also learned how to pace myself better through the excellent coaching at Josephs Court and the MS-UK Mindfulness training.
'I now appreciate doing the exercise as it enables me to garden regularly, as long as I’m strict with my pacing! Now I have four grandchildren under the age of four and another on the way, and I have begun to feel that I would be missing out on enjoying family time together, but my increasing fitness and activity has meant that while I still find it very tiring to play with the three year olds, alongside looking after the one year old twins, I’ve been able to find ways to cope with them all and enjoy them without exhausting myself.
'I also have advice to those who are affected by MS and are nervous about exercising. I would say that I feel that good information is the key to living positively with MS. When I was first diagnosed 13 years ago, I didn’t ask questions. I was in denial for about 10 years before I finally plucked up the courage to go to Josephs Court. By then my fitness and strength had deteriorated massively impacting negatively on my general health and wellbeing, so I wish I had been able to ask the questions I needed to earlier in my diagnosis. I have found in the last two years that mental and physical wellbeing, with keeping yourself as fit and healthy as possible, are so important if you’re living with MS, or a similar chronic condition. When I started exercising at Josephs Court, I hit my fatigue wall almost immediately but with the help and encouragement of my Wellness Coach, Jay, I was able to slowly improve.
'Another benefit that I found with exercising is the social part of it. I loved meeting other clients, something I was very nervous about to start with. But chatting with other clients, comparing notes and encouraging others has been a lovely but unexpected bonus, and has really helped me look much more positively on myself with MS. Also, joining the social group and attending social events such as the regular coffee mornings, has been a very enjoyable revelation for me, and helps me to think so much more positively about MS.
'Finally, I find the exercising therapeutic, I feel really well after an exercise session – I am more relaxed and subsequently sleep better; and by the next morning my back and leg pain and spasticity are very much reduced. It improves my strength and stamina and increases my sense of wellbeing. Now, I can also enjoy time with my family and friends without constantly feeling exhausted. “I don’t feel ‘ill’ anymore!"'
'I was diagnosed with MS in the summer of 2007 and I quickly tried to find out more about it and what I could do. Of the various organisations offering advice, it was MS-UK (or MSRC as it was at the time) that I found most helpful and supportive. The pragmatic and un-blinkered information, the positive attitude of taking control of your own situation helped me through those first difficult few months, and that idea of taking control of your own health is still very much with me.
'Fortunately I then got the chance to join the Board of Trustees at MS-UK and it gave me a chance to use the skills I had developed in my management consulting career for an organisation that really was making a difference to people’s lives.
'Before I was diagnosed I was very physically active, despite a demanding job that took me to many places around the world. The mountains and mountaineering was my real passion, and as well as rock and ice climbing I ran and cycled. Ironically it was a friend seeing me stagger back from a day’s rock climbing that made me go to the doctor and started the process that led to my diagnosis.
'I have primary progressive MS and immediately after diagnosis my physical symptoms were pretty minor. But as my mobility worsened I couldn’t climb anymore, I kept falling over when running because of my foot drop, and tunnel vision when tired made road cycling too dangerous. Climbing was a big part of my life and not being able to do this felt like a huge loss to me.
'So now 12 years after diagnosis with PPMS I do what I can when it comes to exercise and it’s still a big part of my life. I can’t run at all or walk far, so I have a rowing machine for cardiovascular exercise. I used to have a rowing club nearby that offered assisted rowing which was wonderful. I have a home gym where I can do resistance and strength work and have joined The MS Gym.
'I have seen the benefits of exercising personally and am certain it has allowed me to recover some lost ability. For a while my foot drop was pretty bad - all my right shoes had the familiar tell-tale scuff marks around the toe. But amazingly I found that by working on my right foot and leg I managed to nearly get rid of the foot drop – so now it’s only when I’m really tired that I have a problem. This helped convince me that although I might not be able to recover all the function I’ve lost, I may be able recover some function and must do what I can to maximise what I have.
'I also have some advice to people affected by MS who are nervous about exercising. Exercise will not make your MS worse. Even if you feel exhausted or can’t even move immediately after exercising, you will recover. And it is fine to exercise to ‘failure’ and push your limits – just make sure you’re safe, be aware of form, and have time to recover. There are lots of stories from those with MS that have some functional recovery by exercising, including at basic levels of movement. Also brain loss as we age is much faster in those with MS and exercise slows this loss. However, it can be hard, especially with the fatigue and mobility issues. There is lots of help out there to start you on your exercising journey. Neuro physiotherapists can be incredibly helpful and your MS nurse or consultant might be able to refer you. Many gyms offer advice and training programmes, and there are assisted activities all over the UK. MS-UK and the MS Trust have general advice and more details on exercise programs.
'I also found that exercising with MS requires a huge amount of concentration and can be very tiring. It’s not just a case of “use it or lose it” because form is really important. When I exercise I’m also trying to create new neural pathways to overcome functional loss, so learning and practicing the right way to move is vital.
'Finally, I feel that exercising is therapeutic and I know that I have recovered some lost function through exercising. I’m convinced that if I didn’t exercise, I would have lost more function and exercise has helped me alter the trajectory of the condition. But I just enjoy doing it and feel so much better - even if I can’t move a step immediately afterwards!'
I have been living with multiple sclerosis (MS) for thirty-five years. In 2014 I noticed that walking was becoming more difficult and my MS nurse recommended that I contacted Josephs Court, MS-UK’s wellness centre in Colchester, Essex. I attended twice a week to exercise and became a founding member of their Steering Group. Before I was diagnosed with MS, I exercised every weekday walking for 10-15 minutes to the office where I worked in London. At lunchtime I would occasionally go for a 30 minute walk if the weather was kind, and this felt like it was a sufficient form of exercise. However I was unfortunately diagnosed with MS, but nevertheless I continued exercising in the same way for another 13 years until I eventually changed jobs in 1996. By then I commuted to Basildon by car – therefore my exercise regime came to an end.
But now, I visit Josephs Court two mornings a week, for 2-3 hours each time, and use most of the equipment available. I’ve also increased my exercise since the arrival of the latest university students, as one of them has given me some rigorous exercises using the parallel bars.
Now I feel that doing gentle exercise gives me a feeling of “getting one over on my MS” – it isn’t going to stop me from doing something that I enjoy, and there is a social aspect too. We are all suffering with the same disease label yet we don’t talk about it, we just enjoy one another’s company. The social aspect means I now have someone else to talk to, and shows that I needed something to relieve the boredom of not working, as I spent three years applying for jobs with no luck.
Finally, I thoroughly enjoying working with the student physiotherapist Becca, as she has brought new ways of exercising to me. I also find volunteering for MS-UK therapeutic – it is another reason for existing and gives me purpose.
'In 2016, I was diagnosed with progressive multiple sclerosis (MS) and decided to find out more about MS-UK’s wellness centre, Josephs Court, especially when it really began to affect my balance. I visited weekly and have found the welcoming atmosphere really helpful to me, especially with things such as discussing treatments, and getting ideas and tips for coping.
'Before my diagnosis, I played table tennis to county level as an under 17 and took qualifications to become a swimming teacher. In my youth, I even became a lifeguard with the Guildford Lifeguards. Many years later I joined a gym with my middle daughter Naomi, and we used to go several times a week.
'Alongside this, we also used to cycle to the school I was teaching in and where Naomi was also a teaching assistant. It really was downhill all the way to school, but uphill all the way back. Naomi was able to cycle all the way home, but I had to walk and push my bike for some of the way. Then in 2007, I moved to Great Totham so cycling to work was no longer an option, just an 80 mile round trip to school and back.
'After diagnosis however, my exercise regime was affected, and I didn’t think that exercise would work for me as it used to. My balance was going and I could no longer ride my bike as a result. I even tried stabilisers, but I continued falling off. Subsequently, I started going to Josephs Court and at first, I couldn’t really see the point of it. I could still walk even though my balance was shaky. However, I kept going and then soon realised just how much I needed what Josephs Court could offer and help me with.
'Following this, I ordered an adult tricycle, and was amazed when I was able to get on and ride it straight away, albeit not very far to begin with. But now two and a half years later, I’m able to ride 4.5 miles most days around my home village of Roxwell. I sometimes book myself in for a six week course of hydrotherapy. I think the feeling of being able to walk across the pool with no sticks or rollator is amazing.
'Because of what services there are for those diagnosed with MS, I can’t value exercise highly enough. I have always been competitive, so Josephs Court and tricycling gave me this challenge.'
Next week will mark MS Awareness Week 2019. This year we’re very excited to be working alongside the MS Trust and the National MS Therapy Centres to raise awareness of the benefits of exercise.
We have developed a free booklet all about exercise which includes some seated exercises to help you get started. We hope you find this useful and it includes first-hand quotes from other people who have been in your position - people who can truly understand and empathise with your feelings about exercise.
The MS-UK Helpline team
MS Awareness Week 2018 is drawing to a close – thank you so much for all your support!
Over the past few days our supporters have been making their voices heard and spreading the word of our newest national service, MS-UK Counselling.
We at MS-UK would like to thank everyone who championed our message that it’s ‘good to talk’ by sharing our posts on Facebook and Twitter, reading our blog, and opening up about life with multiple sclerosis (MS).
With your help, counsellors like Jonathan hope to be able to reach out to as many people across the UK affected by MS.
We at MS-UK are inclined to agree. This year, inspired by the recent launch of our MS-UK Counselling service and MS Awareness Week 2018, we're praising the power of talk. We believe that the simple act of opening up to someone who'll listen can have a hugely beneficial impact on a person's wellbeing and quality of life.
We sat down with MS-UK counsellor Jonathan who told us what he finds most rewarding about being able to lend an ear to those in the MS community.
We at MS-UK believe that giving people the opportunity to open up and talk about life with MS is just as valuable as any physical support. The simple act of listening to people’s worries and concerns – no matter how big or small they might believe them to be – can have a hugely positive impact on both mental wellbeing and quality of life.
Since launching the pilot of our counselling service in October 2017, our counsellors have reached out to over 150 people affected by multiple sclerosis (MS). But our aim is to lend an ear to even more. Over this week the vital work of the counselling team will be taking centre stage. We want to raise awareness of the service for those who need it in the MS community across the UK, discuss the many benefits of counselling, and help smash the stigma that may still surround mental health.
And you can get involved too! We’ve put together a list of five different ways you can make your voice heard during MS Awareness Week and help us spread the word of MS-UK...
1. Engage with MS-UK on social media
2. Share your own counselling experiences
There’s no shame in seeking out counselling services – 1 in 4 adults in the UK are affected by mental health issues after all – but some people are still afraid to talk. Share your own counselling stories with us using the hashtag #MSAwarenessWeek and you might inspire someone else to do the same.
3. Share info about MS-UK Counselling with your MS nurse
Does your MS nurse know about the MS-UK Counselling service? Why not talk to them and see if it’s something they might consider referring to in the future. You can also request some MS-UK Counselling leaflets by emailing our team at firstname.lastname@example.org
4. Have a chat over a cup of tea
There’s nothing better than a bit of banter over a cup of tea and Victoria sponge! Why not celebrate MS Awareness Week by getting together with friends and talking about multiple sclerosis? After all, it’s good to talk!
5. Download our MS Awareness Week resources
You can show your support for MS Awareness Week and jazz up your Facebook and Twitter profiles at the same time by downloading our MS Awareness Week resources! Check out our blog and follow the instructions to get your hands on a brand new banner.
This time next week MS-UK will be celebrating MS Awareness Week, and you can join us!
This year we are spreading the word about our newest national service, MS-UK Counselling. I would love you to get involved by downloading our Twitter and Facebook graphics...by adding them to your profiles you will be helping us reach even more people affected by multiple sclerosis who may benefit from counselling.
Right click on these images and select 'Save image as...' to download them to your computer:
Thank you for your help!